This article was posted with the support of Shosh and Jonny. If you have any information about treatment options, anywhere in the world, then please contact email@example.com.
Life can be cruel.
We see it all the time in our clinical practice but when it moves into our personal sphere then our perspective changes.
Eve* is the 4 year old daughter of a very close friend of mine. In August 2015 she was diagnosed with a neuroblastoma. She’d had very minor constipation for a year or so, like so many 3-year-olds, but no other major issues. Her mum, Shosh, noticed a lump in her tummy when she was in the bath one evening and ended up in ED with an US report suggesting a likely neuroblastoma.
The bone marrow and biopsy showed the worst possible outcome. Stage IV neuroblastoma. The five year survival stats weren’t what we were hoping to hear. I sat with Jonny and Shosh while the oncologist delivered the results to them and the registrar scribbled furiously on her notepad. I’d been that registrar in these very same conversations only a few months earlier when I did my Oncology term. Feeling sympathetic but trying to maintain professionalism. Trying to keep my head down and document what was said.
It is so very different sitting on the couch rather than on the hospital chairs. I could only think about my lovely friends, Jonny and Shosh, and what lay ahead of them. And what lay ahead for Eve. They, like me, were stunned. Shosh wondered how she hadn’t noticed it before – should she have seen it earlier, had her occasional constipation actually just been a sign of a growing tumour? I had sat with Eve on my knee in our house only a few days prior to the diagnosis, my hands around her belly. I’m a paediatrician – how did I not feel this large mass?
They thought also about their other three kids, their friends, their business. There was so much to process. The Oncologist started talking about treatment but it was impossible to take it all in. Even I couldn’t concentrate on the details and I knew the treatment plan already – how could they possibly process it?
But they got through it. One year of a brutal treatment protocol – chemotherapy, surgery, radiotherapy, stem cell transplant, immunotherapy. Eve had the works. Treatment by a great team in the hospital where I worked, surround by such a supportive network of friends and family. There were many lessons to be learned on how medical staff deal with patients that I’ll share another time. When you’re on the other side you realise how many of the things that seem small to us as medical staff actually have a significant impact on the families.
Eve finished her treatment last month. She rang the ‘end of treatment’ bell in the Oncology Ward, and I was so pleased to watch on as her family all cheered. Her hair was growing back, she went back to pre-school a couple of weeks ago. The family were thinking of booking a well-deserved holiday. Life was returning to normality.
Last week she had her end of treatment scans. This would be a final confirmation that the treatment had gone so well, that it was worth all the stress and pain. Time to start moving on.
But it didn’t go to plan. After normal bloods and catecholamines, the end-of-treatment MIBG showed a mass the size of an eyeball between her brain and her skull. It was removed last week. The biopsy results came back on Friday. It’s a neuroblastoma relapse. The treatment options now are uncertain and the evidence-base is letting us down. The studies on relapse treatment are small and very new – some are only just in their infancy.
Shosh and Jonny have some decisions to make about which treatment path to choose – how can anyone make a decision like this when even the medical teams don’t know which option is best? I, along with the rest of their friends, can only be there as much as we can to support them in making these impossible decisions.
Life can be cruel.
Shosh and Jonny are researching all possible options for treatment of relapsed neuroblastoma right now as Eve is starting her treatments immediately. If you have any information about treatment options for neuroblastoma relapse, anywhere in the world, then please contact firstname.lastname@example.org.
*names changed for confidentiality